OJ's Blog

Turning 21. It’s supposed to be a milestone, right? Everyone around me seemed to think so, and if I’m being completely honest, I didn’t really care all that much. I don’t mean that in a disrespectful way. It wasn’t that I didn’t appreciate it, because trust me, I love a good birthday party. I love the kai (food), the kōrero (talk), the way everyone gathers to celebrate someone’s life. And let’s be real, I definitely appreciated my family coming together, especially those who traveled far—people I hadn’t seen in years. That part was mean as (awesome). But... it just wasn’t my version of a birthday. There’s a certain amount of chaos that comes with these things, especially when it’s a big deal birthday. Us Māori, we love to go hard—whānau (family) everywhere, people rushing about to make sure everything’s ready, something always going wrong right at the last minute. And it’s not like my family did anything out of the ordinary; they were doing what we do—throwing a massive celebration, pulling out all the stops, and trying to make it perfect because, well, turning 21 is a big deal in our culture. It’s the one where everyone’s like, “Welcome to adulthood,” even if adulthood was already kicking my arse well before that. For my mum, it was especially important. She’d always made a big deal out of this for me because, with CF (cystic fibrosis), I wasn’t even supposed to make it this far. I get that. She wasn’t just celebrating me turning 21; she was celebrating me beating the odds, flipping CF the bird, and making it here. And I think that’s why I just went with it. I spent time with my family, got drunk, laughed a lot, and soaked in the fact that I was here when I wasn’t meant to be. But if you ask me if it was my ideal birthday... nah, not quite. See, my version of a birthday is way simpler. All I need is my family—the ones I genuinely enjoy being around, the ones who I can just vibe with without the whole production. Give me a nice dinner, nothing fancy, nothing that makes everyone sweat buckets in the kitchen, and yes, I still want to get drunk—just, you know, in a laid-back way. No drama. No one busting their guts trying to make sure it’s the party of the year. Just us, chilling, laughing, having fun, and enjoying each other’s company. That's it. No expectations, no pressure to make it perfect—because, in my opinion, perfection is overrated. I’ve spent my life fighting for just being here, and being surrounded by those who make me feel alive without all the fuss—that’s more than enough. My 21st wasn’t bad. Not at all. It just wasn’t me. But I get it. I get why my whānau wanted to make it big, why my mum wanted to celebrate it the way she did. It’s a victory. And, in its own way, it was a good day. I’ll carry that with me, but when it comes down to what I really want, it’s just the small things. The simple things. My people, good kai, a few drinks, and just living. No stress, no big fuss. Just us.

Rua tau (Two years). Two years since Trikafta found me, or maybe I found it, at a point where there wasn’t much left of me to find. I look back on the journey, and all I see is darkness—long, hollow stretches of darkness where hope seemed like a cruel joke. Every day before Trikafta was a battle, not against something that could be beaten, but against my own body—a body that betrayed me every single breath. The pain, the exhaustion—it was endless. Kei te kaha tonu ahau (I was holding on), but the question was always there: how much longer could I do this?

I remember the moments when I felt like I was letting everyone down, the shame that crawled over me as I watched them fight for me. My whānau (family), the doctors, the nurses—they were all giving everything they had, and there I was, teetering on the edge, losing hope. The truth is, I was giving up. I was letting CF win because it all became too much for me. I was drowning in the pain, not just the physical pain, but the emotional weight of knowing that my suffering was hurting everyone around me. Every time I looked at my mum, at her tired eyes that still held so much aroha (love), it broke something inside me. I felt like I was a burden, and that was what hurt the most—not the sickness, not the failing lungs, but the weight I was putting on everyone I loved.